I am a 48-year old mother of 3. My doctor said my bone marrow test indicated 5℅ but to diagnose myeloma it needed to be 10℅. What does that mean? I have to have another bone marrow biopsy on my other side of my hip and also a kidney biopsy?
Wish I had asked her more questions as I feel very confused and worried. Can anyone help?
Forums
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sharon67 - Name: sharon
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: september 2015
- Age at diagnosis: 48
Re: MGUS diagnosis today - confused
Hi Sharon,
MGUS is a benign condition where your body makes abnormal cells that tend to overcrowd the bone marrow (where these cells are produced), and these limit the bone marrow's ability to produce normal cells (such as red blood cells and white blood cells). It is normally considered benign as long as less than 10% of the marrow is filled with the abnormal cells. If and when they occupy more than 10% it is considered myeloma, which by itself has different stages: asymptomatic (or smoldering) and symptomatic (ie. active).
MGUS is a common condition affecting about 3-5% of the population, usually over 50 years old but it can happen earlier. The vast majority of people with MGUS do not know they have it, and the vast majority will never progress to myeloma or similar conditions. Simply put: their body will keep producing abnormal cells for decades without any increase significant enough to cause trouble.
Did you get more tests done? SPEP (serum protein eletrcophoresis), IFE (immunofixation electrophoresis), SFLC (serum free light chains)? These are usually the tests done in conjunction with a bone marrow biopsy to help diagnose MGUS and get more details about what type of abnormal cells are produced (IFE) and, in what quantity they are bring produced (usually the SPEP). The FLC test is done as the bad cells can go crazy and produce only parts of a bad cell, but in large quantities that can migrate to other organs (kidneys in particular) and cause damage.
If you can share the results of the tests above we can explain some more. But the bottom line is that MGUS is benign and has a 1% chance of progression to something more serious (like myeloma) every year (20% over 20 years). This is why doctors want to follow up patients with MGUS on a 6-12 months basis depending on initial findings.
We too have 3 young children and diagnosed with MGUS about 18 months ago, at 41 years old. Everything has been stable since. We get evaluated on a 6 months basis for now and may push to 12 months soon.
Hope this helps!
MGUS is a benign condition where your body makes abnormal cells that tend to overcrowd the bone marrow (where these cells are produced), and these limit the bone marrow's ability to produce normal cells (such as red blood cells and white blood cells). It is normally considered benign as long as less than 10% of the marrow is filled with the abnormal cells. If and when they occupy more than 10% it is considered myeloma, which by itself has different stages: asymptomatic (or smoldering) and symptomatic (ie. active).
MGUS is a common condition affecting about 3-5% of the population, usually over 50 years old but it can happen earlier. The vast majority of people with MGUS do not know they have it, and the vast majority will never progress to myeloma or similar conditions. Simply put: their body will keep producing abnormal cells for decades without any increase significant enough to cause trouble.
Did you get more tests done? SPEP (serum protein eletrcophoresis), IFE (immunofixation electrophoresis), SFLC (serum free light chains)? These are usually the tests done in conjunction with a bone marrow biopsy to help diagnose MGUS and get more details about what type of abnormal cells are produced (IFE) and, in what quantity they are bring produced (usually the SPEP). The FLC test is done as the bad cells can go crazy and produce only parts of a bad cell, but in large quantities that can migrate to other organs (kidneys in particular) and cause damage.
If you can share the results of the tests above we can explain some more. But the bottom line is that MGUS is benign and has a 1% chance of progression to something more serious (like myeloma) every year (20% over 20 years). This is why doctors want to follow up patients with MGUS on a 6-12 months basis depending on initial findings.
We too have 3 young children and diagnosed with MGUS about 18 months ago, at 41 years old. Everything has been stable since. We get evaluated on a 6 months basis for now and may push to 12 months soon.
Hope this helps!
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Cedb
Re: MGUS diagnosis today - confused
What prompted you to see the doctor in the first place (bizarre fracture, bone pain, tiredness?)
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: MGUS diagnosis today - confused
Thank you for your replies, they made me feel less worried.
I have had numerous blood tests since last February. It started with chronic anemia which I had transfusions for. I then had pains in my chest/ribs and nerve endings . This lasted 3 months. I then had anemia again this April, and my doctor referred me to the haematologist.
I have had a skeletal survey, CT scan and bone marrow biopsy (BMB) in the last month. I'm waiting for BMB and a kidney biopsy, which the haemotologist has asked for.
I have had numerous blood tests since last February. It started with chronic anemia which I had transfusions for. I then had pains in my chest/ribs and nerve endings . This lasted 3 months. I then had anemia again this April, and my doctor referred me to the haematologist.
I have had a skeletal survey, CT scan and bone marrow biopsy (BMB) in the last month. I'm waiting for BMB and a kidney biopsy, which the haemotologist has asked for.
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sharon67 - Name: sharon
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: september 2015
- Age at diagnosis: 48
Re: MGUS diagnosis today - confused
Anything show up in your ribs in the skeletal survey or CT scan?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: MGUS diagnosis today - confused
She didn't say anything had. Wish I had asked more questions. Am writing things down now so I can ask her next time. Just felt like I wanted to get out of there. She seemed more concerned about my kidneys.
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sharon67 - Name: sharon
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: september 2015
- Age at diagnosis: 48
Re: MGUS diagnosis today - confused
Hello Sharon,
Thanks for introducing yourself. I'm sorry for the confusion and concern that you are feeling, but it is completely understandable. There is so much that is new and overwhelming when you first get news like this. Not only is there the emotional impact, but you also have to learn a lot of new, technical concepts.
Cedb did a great job providing you some background information about MGUS and how its connection to other, related diseases like multiple myeloma. It sounds like your doctors are having you tested in exactly the right ways, which is excellent.
One reason your doctors are being so thorough in their testing is probably the anemia you've had for a while. Anemia can be a symptom of multiple myeloma, but it also can be the result of other conditions. So they are working hard to really understand the source of your issues.
Are the tests you're having done being carried out at a cancer center where there might be a myeloma specialist? Having hematologist-oncologists involved in the diagnosis prognosis is important, but it would be particularly helpful, I think to have input from someone who specializes in myeloma and related plasma cell disorders. These doctors are hematologist-oncologists who really focus on multiple myeloma, which is important, because the disease is rare, and basic things like how to diagnose and treat the disease are changing constantly as new research results are released.
Please keep us updated on what you find out from your testing, and let us know any additional questions that you have.
Good luck!
Thanks for introducing yourself. I'm sorry for the confusion and concern that you are feeling, but it is completely understandable. There is so much that is new and overwhelming when you first get news like this. Not only is there the emotional impact, but you also have to learn a lot of new, technical concepts.
Cedb did a great job providing you some background information about MGUS and how its connection to other, related diseases like multiple myeloma. It sounds like your doctors are having you tested in exactly the right ways, which is excellent.
One reason your doctors are being so thorough in their testing is probably the anemia you've had for a while. Anemia can be a symptom of multiple myeloma, but it also can be the result of other conditions. So they are working hard to really understand the source of your issues.
Are the tests you're having done being carried out at a cancer center where there might be a myeloma specialist? Having hematologist-oncologists involved in the diagnosis prognosis is important, but it would be particularly helpful, I think to have input from someone who specializes in myeloma and related plasma cell disorders. These doctors are hematologist-oncologists who really focus on multiple myeloma, which is important, because the disease is rare, and basic things like how to diagnose and treat the disease are changing constantly as new research results are released.
Please keep us updated on what you find out from your testing, and let us know any additional questions that you have.
Good luck!
Re: MGUS diagnosis today - confused
Thank-you all so much for replying to me. I had an appointment for my kidneys today and she said she thinks I do have myeloma. I still have the biopsy's to have and my hematology is at the Macmillan centre at the hospital. I guess it's now time to just wait and see what happens next. It's nice to have this forum to talk on thank-you.
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sharon67 - Name: sharon
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: september 2015
- Age at diagnosis: 48
Re: MGUS diagnosis today - confused
Sharon,
A couple of things to complement the discussion and to make sure you get a grasp of the fundamentals!
When the doctor says you have myeloma it may be the asymptomatic form (smoldering). This has a higher risk of progression to multiple myeloma than MGUS BUT many never progress. So be sure to ask about this.
Also, if you are having kidney issues one of the key parameter to monitor is creatinine in your blood, which is a byproduct of kidney function and goes up when kidneys are struggling to get rid of the bad protein. Did you have your creatinine level checked?
Other fundamental measurements in myeloma are calcium levels (because the bad protein "eats up" the bone and the calcium gets released in the blood), creatinine, complete blood count (anemia is usually present in most patients early on) and finally bone lesions (need x-rays or other imaging technology use). The above form what is called the C(alcium)-R(renal)-A(nemia)-B(ones) factors which most doctors look at for myeloma. Another component is the white blood cells count, but these usually only get impacted (less are produced) when there is evidence of a strong disease burden already.
Let us know if you have more questions. I personally found it so empowering to understand about MGUS and its cousins and to be able to discuss with our specialist at each visit.
Hang in there and do not panic. Even if it is myeloma it is important to realize that it is the one cancer that has seen the most progress in the last 5 years. All the stats you can read about on the web are not reflecting today's results with new therapies...
Cedb
A couple of things to complement the discussion and to make sure you get a grasp of the fundamentals!
When the doctor says you have myeloma it may be the asymptomatic form (smoldering). This has a higher risk of progression to multiple myeloma than MGUS BUT many never progress. So be sure to ask about this.
Also, if you are having kidney issues one of the key parameter to monitor is creatinine in your blood, which is a byproduct of kidney function and goes up when kidneys are struggling to get rid of the bad protein. Did you have your creatinine level checked?
Other fundamental measurements in myeloma are calcium levels (because the bad protein "eats up" the bone and the calcium gets released in the blood), creatinine, complete blood count (anemia is usually present in most patients early on) and finally bone lesions (need x-rays or other imaging technology use). The above form what is called the C(alcium)-R(renal)-A(nemia)-B(ones) factors which most doctors look at for myeloma. Another component is the white blood cells count, but these usually only get impacted (less are produced) when there is evidence of a strong disease burden already.
Let us know if you have more questions. I personally found it so empowering to understand about MGUS and its cousins and to be able to discuss with our specialist at each visit.
Hang in there and do not panic. Even if it is myeloma it is important to realize that it is the one cancer that has seen the most progress in the last 5 years. All the stats you can read about on the web are not reflecting today's results with new therapies...
Cedb
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Cedb
Re: MGUS diagnosis today - confused
Thank you, having BMB tomorrow and seeing consultant September. Now know sort of things to ask about. Thanks to you all. I haven't heard anymore about my kidney biopsy. Still waiting for appointment. I'm reading lots of people's experiences on here and definitely feel more optimistic. Hope we all stay well.
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sharon67 - Name: sharon
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: september 2015
- Age at diagnosis: 48
17 posts
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